Thursday, October 1, 2009

October is Down Syndrome Awareness Month

A Child Shall Lead Me
By Madonna Dries Christensen

In 2004, my daughter and her husband were living in South Africa when their second child was prenatally diagnosed with Down syndrome. When they informed family and friends, they added, “This baby is still a gift, just in different wrapping.” We all eagerly awaited this addition to our family.

With an immense geographical distance between us I could not gauge the extent of the couple’s feelings, but surely their minds eddied through a storm of emotions, fears, and questions. Still, I felt confident they could handle whatever came their way. This baby, who would require open heart surgery, was in the best parental and professional hands.

My daughter went into pre-term labor at 36 weeks. With medication, they were able to control contractions for a week before she returned to the hospital, where Sarah was delivered by C-section. Due to difficulty breathing and eating, she remained in NICU for three weeks.

At home, lacking the strength to breast or bottle feed, Sarah took formula and medication through a tube and was attached to an oxygen monitor. If her oxygen level dropped too low, a buzzer sounded. She did well on her own and needed assistance only a couple of times. Pride and admiration spilled over when I watched my daughter change the tube with speed and precision, causing Sarah the least amount of trauma. Soon we all relaxed a bit and began treating her like any newborn.

At three months, the cardiologist determined that it was time to repair Sarah’s heart. Family and friends formed a prayer circle that wrapped itself around the world via the Internet. The surgery went well, and Sarah’s walnut-sized heart began functioning properly. But a day later one of her lungs collapsed and doctors began a treatment they warned might not be successful. Again, we collectively held our breath and prayed. She rallied, but we later learned that she almost didn’t survive. After three weeks in NICU, she went home.

Back in the United States at five months, Sarah plunged into life full speed ahead. She wiggled across the floor when laid on her tummy. One could hardly hold onto her when changing her diaper. Enrolled in early intervention programs, she crawled at eleven months, spoke her first word at fourteen months, and walked at eighteen months. At twenty-eight months, she shouldered a pink backpack and eagerly climbed aboard a bus to the public school’s special needs class. Her first communication was signing, but she’s now verbal. She attends a regular Kindergarten, with supplemental Special Ed. Stepping off the “big girl” bus on her first day, Sarah clasped her sister’s hand and yelled, “I did it, Gracie.”

Sarah’s upbeat personality brightens a room. Children gravitate toward her (her mother silently calls her Queen Sarah). Boy classmates vie for her attention, but since the day she and a boy named Conner met in pre-school, they’ve been best friends. Sarah captivates adults with her disarming smile, her blue eyes, her corn silk blonde hair, and her sunny disposition. Well, sunny most of the time. Belying the myth that people with Down syndrome are always cheerful, Sarah exerts independence, spunk, and stubbornness.

Her energy propels me to keep physically and mentally active. Babysitting her and her siblings is a lesson in staying fit. When my grandchildren ask me to play, I’m ready. We enjoy endless games of Hide and Seek; walk to the playground, or to the creek to feed the ducks. We all love books. Having them snuggle on my lap while I read aloud is as luxurious as life gets.

Through Sarah, I’ve also earned to slow down. I’m more patient when waiting in line, or when an automated telephone voice puts me on hold. If the interim music is too loud and not to my taste, I remember that all birds sing, not just those with pleasant voices. I realize that different voices can be uplifting.

Before Sarah, I paid little attention to people with Down syndrome. Now I recognize beauty in their distinctive features, the mischief in their eyes; the honesty of their smiles and laughter. I chat with the young man who pushes my grocery cart to the car. I talk about reading with the teenaged girl who shelves books at the library. I understand that people with Down syndrome want to be, and can be, productive members of society. My husband and I attend Special Olympics and cheer each athlete’s performance. Confident of Sarah’s capabilities, we contribute to her college fund.

Sarah, with actor Chris Burke

An old adage claims that children with special needs are given to special people. I don’t believe that babies are distributed in that manner, but I believe parents who love and cherish these children become more understanding and nurturing because of them. I admire my daughter and son-in-law’s knowledge as they make decisions regarding Sarah’s future. Through their example and by watching her steady progress, I’ve learned to value the lives of people of all ages, with and without visible problems. At seventy-plus, I’m blessed with being led by a child who knows how to live each day to the fullest.

[This essay appears in the recently published anthology, Gifts 2: How People With Down Syndrome Enrich The World.]


  1. Randi, I never knew about this down syndrome! thanks for informing us about this! love the girl! May God Bless her!

  2. Naqvee: And may God bless you for your kind comments! Also, thank you for taking the time to read the article. Many people are not aware of Down Syndrome, so I was happy to know that this post has brought a greater awareness.

  3. Randi,

    A nice tribute to Liz on your sidebar. She had a way of taking somber thoughts of mine and turning them into something bright and positive. That was one of them.

    I thank you for posting the article on Sarah. My younger grandson is a down syndrome child, born in 2004, who also went through open-heart surgery, also with complications. He is a physically healthy child but his mental progress seems to have been far slower than Sarah's. Your post moves me to inquire if we are doing all we can for this child.
    I can't thank you enough.


  4. Robert: Marie inspired me to put that quote on my site. I loved it when Liz wrote it, but had forgotten about it. It was one of my favorites, especially since I never know how to defend myself when on occasion people ask me how I could bring children into this dark world.

    Your grandson was born the same year as Sarah. If you would like some information regarding what has been done for Sarah, I can probably get that for you. Just let me know. The author of the article happens to be my own dear Auntie M., and Sarah's mother is my cousin. I am sure either one would be excited to share her curriculum with you.

  5. Randi,

    Thanks for the offer. I will keep it mind. I've going to pick up a copy of the book and perhaps share it with my daughter. We'll see where that leads.


  6. Robert: Good luck, Robert. I've not read the book yet, only this article, but I'm sure you'll find some words of wisdom. Let me know if we can help.

  7. @Auntie M,
    Glimpses like this of other people's lives, their challenges and triumphs stretch our hearts and let more love in. This piece would have touched me even if it hadn't been so beautifully written.

    I'm honoured that you and Randi let me contribute to your book and I hope that the proceeds will help many families with Down Syndrome children lead the kind of love-filled life that Sarah has.

    You and your family inspire me. So much love.

  8. you have an award to receive from my side! come soon and grab it!
    your brilliant pieces of information has enlightened me on various topics.
    love Naqvee

  9. Janice: And YOU inspire me as well! More often than you will ever know...

    Naqvee: An award! I am so excited. I shall head over there right now. Thank you!

  10. Janice:

    Thanks for your comment. Sarah truly has enriched our lives (as have her sister and brother).

  11. Randi, this is such a beautiful and informative article. Your post is truly opening everyone's eyes to how the world is a better place because of the wonder, achievement and beauty shared by those with Down's Syndrome. Thank you very much for sharing!

  12. septembermom: You are so welcome! I am grateful to Auntie M. for her insight and ability to share these details in such a touching way. I was really glad to be able to participate in Awareness Month.

  13. For a brief bio on actor Chris Burke, see my website:
    Photos tell the story of Sarah Meets Chris Burke.

  14. Auntie M: Oh good! I'm glad those are on your site. I love the whole sequence of photos because they are a story themselves. I just hopped over there and laughed all over again. Thank you!


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